A newbie here. I was diagnosed in November '24 and started Hydroxychloroquine. This has been ineffective, so my consultant has now recommended me starting Methotrexate. I am worried about going onto this after reading the medical leaflet.
Would anyone be prepared to share their experiences of starting this medication please and give me any advise. My starting dose (tablets) is 15mg once per week and folic acid on non Methotrexate days.
Any tips for other things that help with the pain and tiredness would be greatly appreciated.
Thank you.
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CraftyGlass
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Hi, I was much like you although my rheumatologist initially started me on azathioprine. Suffered terribly with side effects so stopped this and after a few weeks commenced on methotrexate. The only issues I experienced in the beginning were nausea and tiredness the day after taking the methotrexate. I was then commenced on a weekly injection instead of the tablets and I experienced no further nausea. Now and again I still feel very tired the following day but I'd be more than likely to relate that to my diagnosis now rather than the medication. You will be well monitored whilst taking the methotrexate, I initially started with weekly blood tests and now I'm 12 weekly. I hope this helps. With the tiredness, I'm afraid you have to learn to pace yourself and accept that you may not be able to do everything at your previous pace. Your body will tell you when you need to take it easier, my experience is that if I don't then my lethargy becomes much worse and I notice an increase of pain. Ive also found that if I take paracetamol and ibuprofen together that it helps more than stronger medication. I also take Amitriptyline at night to aid sleep and pain.🌹
You might find more information on the rheumatoid arthritis forum as methotrexate seems to be prescribed more frequently for that.
My experience is that it upsets my stomach. I take probiotics to help, but other posters have said you shouldn't do this. It also reduces my libido.
I took 25 mg for several years, I then started taking a biologic with it and finally went into remission, the dose was reduced to 20mg to reduce the side effects. Then 15mg, but that meant it was less effective, so I went back up to 20mg and stayed there.
Some people find they can't tolerate it and need to stop taking it. When looking at side effects you have to remember that all the side effects reported by people are listed, it doesn't mean you will get all or even any of them, although stomach problems and fatigue for twelve to twenty four hours or so after taking the weekly dose seems pretty common.
Methotrexate can be very effective. You need to bear in mind that lupus can be a very bad condition so the risks of methotrexate are part of a trade off to stop the lupus worsening.
My advice is to give methotrexate a fair go and try not to worry. I started on tablets but they made me feel tired and nauseous. Folic acid days can be increased to help combat this but eventually I switched to the weekly injection. However some people tolerate the tablets really well and stay on them. The 20mg injection still makes me feel tired and nauseous but less than before.
You need to give it time to work and sometimes allow time for the amount you take to be adjusted. It can be a balancing act but you will be supported by your doctor/consultant. Have a nice dinner, I don't know if this helps the stomach, if it does great if not at least you had a treat, take the tablets and go to bed. The next day try to drink lots of water. I do my injection on a Tue as wednesday is a quiet day for me and I can rest if I need to. You will also be able to pick what day you take them. Methotrexate is really worth trying and I hope it works really well for you.
Hiya, I was on hydroxy and still am but I was on 400mg a day after increasing it because I still had a lot of pain. Then I was offered methotrexate 15mg weekly injections Metoject and I reduced the hydroxy to 200mg. The Methotrexate injections have less side effects. Touch wood it has been fantastic! Less pain, less lead body walking up the stairs and less fatigue. After the first few injections I did get a little stomach pain and diarrhea! But then I don't have to take laxatives so it's a bonus! 😅 I inject in the top of my thighs as better than stomach, although a little more painful as the liquid goes in. Worth it though. Stay still for half an hour after, I do it watching TV in the evening so that I am fine the next day. Have a sterile wipe, plaster and cotton pad next to you for after. You got this and I think that you will feel the benefit 😉 more than any side effects. Ask for the injections. I don't like injections but it's worth it for less side effects. I hope that this helps. Cx 💜💜💜
hi my husband was diagnosed in Dec 24 and started hydroxychloroquine jan 3rd also started mycophenolate Dec 23rd. No side effects up to now luckily but we were told by Rheum not to expect it to work for 3-4mths, so could it be that your medication just hasn’t had enough time to work yet? Not sure, but Dr Google also says 3-4 mths, what does your dr say?
Hi, I was prescribed methotrexate 10 years ago, initially 7.5 now15mg weekly. I didn't experience any side effects other than tiredness. You will be well monitored with blood tests, I have them every 12 weeks. I have to say I was anxious after reading the information but I haven't had any problems. It's worth trying and if it doesn't work for you there are alternatives. Hope this helps.
I take both hydroxychloroquine and methotrexate I now also have biological infusions but never had any real side effects from methotrexate, first couple of doses upset my stomach a little, just opted to take them on a Friday so had the weekend to sort itself out. The most challenging thing I found was keeping up with the blood test at the start but you soon get in the swing of it
Tiredness- you just have to listen to your body and accept you need rest frustrating at times but if you can embrace it, it's gets easier!
Pains, I've tried all sorts hot wax baths, heat packs, pain relief, compression gloves, heated gloves, I've found all take the edge off but when I'm flaring I rest and that really does help.
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